- Chicago, Illinois
Where do you currently live?
- Cicero, a suburb of Chicago
When were you diagnosed and how old were you?
- I was diagnosed Feb 8, 2010, I am 52 years old
Did you know what MM was prior to diagnosis?
- Never heard of it before
Is there anyone else your in family with MM?
- No, but my grandfather had leukemia back in the 1960s
- I was out of breath back in November 2009. My primary care physician kept trying different remedies (for reactive lung disease, asthma, pernicious anemia), looking for the source of my symptoms.
How many times were you referred before actually being diagnosed?
- Twice: to a pulmonologist (who took CBC and found severe anemia) and two weeks later to hematologist/oncologist.
Where have you received treatment?
- I'm receiving treatment at MacNeal cancer center, in consultation with doctor from Rush Presbyterian.
Explain your treatment history
- 2/22/2010 - will receive my first chemo treatment. 40 mil of Dexamethasone, IV of Velcaid, and something to promote red blood production.
Why did you or your doctor choose a specific treatment?
- They are consulting with a group before making decisions.
What has been the side effects of the different treatments?
- I will let you know. Hopefully, they will be minimal to none.
What has been the hardest thing about your MM journey?
- Dealing with the shock, and insensitive HR personnel that thought I was making a big deal about skin cancer. (I applied for FMLA and short term disability to cover days off after my sick/vacation time runs out.)
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
- Keep going back to your doctor if you are not satisfied with their off-the-cuff diagnosis; stay in close communication with your doctor.
How have you been able to stay positive and encouraged in your MM journey?
- Most of the time, so far. I lost my positive focus after talking to HR.
After being diagnosed... What perspective was changed the most?
- I realize how important it is to look for the positive side of everything and to remember to laugh at the funny things.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
- No. But my grandfather used to apply insecticides by hand to his crops, using a cloth bag.
What MM sites or blogs had you found good information from after diagnosis?
- MM for Dummies
- Wikipedia
4 comments:
So enjoy reading Myeloma Mondays...well, I take that back...I wish there where no more cases of MM.
I am surprised you ask only if they have been exposed to chemicals? Do you know that petroleum based products(benzene) are the number one cause of cancer.
http://abcnews.go.com/WN/military-admits-water-contamination-camp-lejeune-1980s/story?id=10152347
A good question to ask might be where there water source came from (ie, shallow well, etc.), since many shallow wells have fuel contamination.
As a cancer patient I support greatly the expansion of biofuels, plant based plastics, since all of these reduce the impact of benzene.
A lot of water has flouride in it as well, and studies have shown that this chemical is equally damaging. I have started drinking water without this in it and have felt better and better over time. It is my opinion that anyone who is having health issues should have their main source of water tested first.
LIZ,
It's a long journey ahead. At times things may seem to get worse before getting better. Its hard but Try to stay positive and look for the funny side. There's always one.
Think only in the present, one day at a time. Keep close to good friends and family, their support will see you through!
Wishing you all the best and I'm praying for you
Rozanne
Hello,
My name is Molly Silapasay, and I’m a project manager at a market research firm, watchLAB. We are currently working with a client on a research project involving individuals diagnosed with Multiple Myeloma and their caregivers. Our client is interested in learning about the challenges that patients may face, and possible ways to improve the lifestyles of these patients.
Interviews will last 1 hour, and we have different times available on April 13th. These sessions will take place in Downtown Chicago . As a thank you for your time, all participants will receive $250-$300.
If you are neither a patient nor caregiver, we are also happy to accept referrals. Those that refer a qualified participant will be mailed a $50 check.
If you are interested in participating, please do either of the following options:
• Send a reply email to molly.silapasay@watchlab.com. Please include your phone number(s), and the best time to reach you.
• Call 510-809-3108 and reference “Multiple Myeloma”
We have to ask a few questions over the phone to ensure that you are a good fit for the study, which should take approximately 10-15 minutes of your time.
Thanks, and we look forward to hearing from you!
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